Grief Glasses

When you live through a traumatic experience, you look at things differently. You have your trauma sunglasses on, and while that can open up your world in many ways, you sometimes forget to take those glasses off and are unable to just live in the world as a normal person. Your child may be overly anxious or shy because they’ve lived through something horrible. Or, that just might be the kid you gave birth to. It’s hard to tell sometimes.

Once in awhile, after I pick my daughter up from school, we take a different route home because of the ridiculous amount of traffic in the area at that time. That route brings us near a cemetery. When we pass it, she often asks me if we can take a drive through the cemetery to look at the graves.

“Certainly,” I reply. And I drive on in, as if we’re going to look at Christmas lights.

We slowly drive past the headstones, remarking on the different sizes and shapes. She asks about the particularly old looking ones and asks me to read the dates to her. Then we figure out how many years ago that person died and talk about how long ago that was. Some of the graves are well over 100 years old.

She asks other questions, too. Because of the job I used to have, I know more than anyone needs to know about burials and cremations. I should wear a t-shirt that says, “Ask me about your final arrangements!” She asked me last week during our cemetery drive, “Will the rain leak into the grave?” I went over how someone is buried. We talked about the casket, the coffin and how everything is sealed shut. She wanted to know why everything is sealed. We often talk about death as a return to nature, so she was befuddled why anyone would want to keep themselves from returning to life in another form. I explained that long ago, people felt it was very important to preserve themselves, so that they would always stay the same, even in death. Nowadays, while many still hold that belief, it is becoming more common to be cremated. Also, since land costs a lot of money, there simply isn’t room enough to bury everybody.

One of my worst parenting flaws, behind very little patience and a tendency to fucking nag constantly, is that I talk too goddamn much.

We left the cemetery and resumed our drive home, and I wondered from where her curiosity stemmed. I know part of it is that she is enthralled with the idea of visiting someone’s grave. She wants a place where that person will be. A tangible spot. Not an urn, and not the vast ocean where her grandmother floats endlessly. But a place where the whole body is, together. A special place to go and be with that person is important to her.

Death is something that she’s had to make room for in her life. It wasn’t distant relatives who died. She lost two very close people, one right after the other. Death was a project she was forced to take on, like a 1000 piece puzzle dropped on the head of a little girl. She’s still on the floor, working on this puzzle, trying to find where the pieces fit. It’s something she’ll work on for a long, long time.

But let’s take the grief sunglassess off for a moment.

I have a memory of myself, at 10 years old, creeping into a closed cemetery to look around. I tried to get back over the gate and wound up stuck in mid-air, hanging off the gate by my cable knit sweater while my friends laughed hysterically. And at 18, creeping through cemeteries at night with my boyfriend, walking around quietly, taking in the idea that I was surrounded by people who had once lived. I read the headstones, taking particular notice at the old ones, the dear babies and beloved wives, the pictures placed on the headstones, the stones left on top, and the ones so sunken in by countless storms that you could scarcely read who it was that was once placed there so lovingly.

My sweet girl is indeed working on that big grief puzzle. She has also inherited a bit of her mother’s weirdness.


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Teaching Kids About Death

In the early, most horrible days, a very trusted child psychologist gave me advice on how to reassure my daughter that she wouldn’t also lose me or her father.

“Tell her that everything is going to be OK. Tell her nothing is going to happen to you.” I knew she was right, too. This wasn’t the time to keep it real for my daughter. She, no, we all, were traumatized and terrified. I needed to be able to shore her up. I was supposed to make her feel safe.

And I did. For awhile, anyway. Over the course of many months, we slowly started coming back from the edge. However, the questions never stopped coming. “When will you die? What will I do when I lose you? Please don’t ever die, mama.”

And I stopped lying to her. I didn’t break it down insensitively, but I was honest about the fact that death is a part of life. I reminded her that because mama and papa made Jay, we all have a bit of Jay in us. And when her grandmother died 18 months later, I reminded her that we are part Gramma. I tell her that yes, I will die one day, but that I take good care of myself and that I am doing everything I can to lead a long, healthy life. I don’t tell her that I’m going to live to be a hundred. She’s seen firsthand that we truly don’t know when our time is up. It’s not my job to bullshit her until she’s an adult. It’s my job to remind her how precious life is.

I also tell her that knowing that we all die makes me love everyone around me that much more. It makes me do things that sometimes scare me. It makes me do things that exhilarate me. It makes me say things that I would have been afraid to utter a few years ago (and a few years ago I still said way more than I should have, so this might be a problem). Many friendships have deepened, fading friendships faded away completely, and I have had deeper conversations with my most cherished people than I think was ever possible before. No, losing my son and mother were not “blessings in disguise.” I just learned a few things.

We hide death from our children. We teach them that only bad people die. Or that babies never die. Or that you’ll die when you’re 100 years old. I was talking to a friend the other day who said, “I love your blog. I mean, I can’t read it all the time because it makes me too sad, but it’s so great.” I felt sorry that she couldn’t even deal with my blog. Most grown adults tell me, “I can’t believe you’re able to stand here and talk to me like this. I never would have survived.” I absolutely hate that statement. A grown adult, speaking to me like a 5 year old would. The lies they were told as children are still looping around in their minds 40 years later: “I’m glad that little thing called Death isn’t going to happen to me. I just couldn’t handle it. Whew!”

A couple of years ago, a wild, unknown animal caught a rat in our backyard and left the carnage on one of our stone steps. Of course, my daughter found it immediately. Instead of ushering her back inside, we looked at it together. It was a complete mess. Maggots were eating it, and ants were eating the maggots. She was fascinated by the whole thing, so I decided to turn it into a lesson about life. The rat was dead. Part of it was food for another animal, who got energy from that food to go do other things. Maybe it fed its babies. The maggots are eating the food and will become flies later. The ants are eating the maggots, which will give them energy to aerate the soil. The actual rat is dead, but the energy derived from that rat is keeping other living things going. The rat continues to help make the world go round, even though it’s not alive anymore.

We continued to come back every few days to check on the rat. Eventually, it disappeared completely. The rat was now gone, but not before impacting countless other beings on this Earth. And while I may pull them up one day, there is a decent collection of moss and weeds where that rat once lay. Life.

This is the way death should be explained to a child. It’s not just something you experience at the end of your life. It’s all around us, and is a necessary part of living. We eat plants and animals, all of which died. We receive that energy and that allows us to take care of ourselves and our loved ones. Without death, there is no life.

I’m still afraid of death. I will lie to myself just so I can get to sleep at night. Leaving my children too early is my greatest fear. But I know the truth, and my deep seeded fear is not going to make me shroud my children from what is not only a natural, but necessary, part of our world.  I truly believe they will grow to be happier, healthier adults understanding that death isn’t something to look away from. In fact, it is only by looking at death realistically are we able to really understand life.


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House of Treasures

Things are going well. Not sure if they’re going well because I’ve been distracted with other things, or if I’m just now able to distract myself with other things because I’m doing well.

We traveled down to my late mother’s house to celebrate Thanksgiving with family. I love being there. My husband and I sleep in her bed. I literally sleep exactly where she died. And I don’t care, either. Sometimes I fantasize that I’m there all alone. I want to get into her bed and peer out at her room from under the covers. I want to imagine what she would be doing if she were still alive. I like to pretend I am a teenager and I get into her bed during summer vacation while she’s up in the morning getting ready for work. I don’t think you ever forget how your mom smells. I remember being in her bed and feeling cozy and happy. That smell conjures up feelings of safety and reliability. I barely ever smell it anymore these days, but when I’m at her house, sometimes it still happens.

I want to lie there and look at her pictures on the wall, stare at the titles of the books on the bookshelf. Look back into her closet and see the still-hanging clothes…the ones I couldn’t get rid of. I want to smell the ocean through the sliding glass door, and watch the white curtains blow gently until I close my eyes.

I love being in her house. I’ll get ready in there, and think of something. “Oh damn, I wish I remembered my shower cap.” And then I’ll open a drawer and one will be tucked away in the back. “I forgot my lipstick.” There’s hers. “I wish I had remembered to bring a hair tie.” I look in a different drawer and it’s there.

My husband remarks on the old, tiny kitchen. I see years of pulling open the cutlery drawer to make a sandwich. He balks at the 70’s countertop. I see countless conversations with my mother sitting on a kitchen stool, asking her about everything from friends to crushes to when would I finally, finally, finally start my period.

“It must be hard being there with your mom gone,” someone said. No, it isn’t. She’s everywhere there. She’s everywhere and she’s not sick and feeling like complete shit. I still find little things there. Grocery store lists, random notes, cards she intended to send, but didn’t. It’s a treasure trove of my mother. It’s stopped in time. She died so quickly. I walk in, a year later, and it still looks like she’s just popped to the store.

Slowly, very slowly, we are making it our own. We’re making decisions on furniture and what needs fixing. But I still treat it like it’s hers. I sweep the floor constantly. I dust as if I live there 24/7. I pull the weeds, water the plants, and still take my shoes off when I come in. When we drag in sand from a beach outing, I immediately clean it up so she’s not disappointed.

When Jay died, one of the first things a therapist told us was to take his carseat out. We were driving around with his carseat still installed for weeks. “It’s not good for you, and it’s not good for your daughter to sit back there and see that. Take it out now.” So, we did. And as soon as it was out, it was a relief. Seeing the empty carseat that used to hold your living child was torture for us and we didn’t realize it until it was out. That reminder did a lot of harm. But this isn’t like that. I feel like I’ll know when it’s time to let that house go. Or maybe it will just become our house naturally, and we’ll never let it go. Either way, for now, I still need it.

I still need her.


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Time Away

Something happened.

It wasn’t just one thing. It was a collection of things. I’d finish the frenetic morning breakfast/school lunch making/drop off routine, look down at my hands and notice all the spots I earned from decades of not wearing sunscreen. I’d look in the rear view mirror and see dark circles under my eyes as well-worn (and seemingly as old) as the Nile River. I quit my job in February, which I certainly do not regret, but am having a hard time with the question “What exactly do you do?”

“Well, I write.”

“Oh really? What have you written?” Genuinely interested parties would ask.

“Oh, it’s nothing. It’s a blog.”

“What is it about?”



And therein would start the conversation of my son. I began feeling like an old, sun-spotted, unemployed Grief Queen. I felt neither interesting nor inspired. I began a healthy handful of blog posts, then would save the draft and go do something else. I had thoughts and ideas I wanted to share; things I felt needed to be said, but suddenly just didn’t have the motivation to keep going. I had to take a break from putting my creative energy toward something that was so serious, so sad, and so solemn.

Not that blogging makes me sad. In fact, it’s profoundly therapeutic. In fact, I should have kept going. But I didn’t. I ran away for awhile and began a new venture. I began a new creative outlet that made me forget about extraordinary sadness, sun spots and a stomach reminiscent of The Saggy Baggy Elephant.  It’s something I intend to keep doing, but it’s good to get back to writing that has a whole bunch more heart.

I was lying in bed the other day when math hit me over the head. I have been thinking about how my son has been gone for two years, and it never occurred to me during all those months of that thinking that year 3 was coming up soon. Christ fuck, 3 years?! How on earth could he be gone for that long? I was watching Floyd in the bath tonight, all happy and laughs. Just having a gay old time, and it crushed me all of a sudden that all of the love and happiness that was Jay isn’t here. He’ll sit in my lap and all I see is the back of his head and feel his little warm body in my lap. I could be reading to Jay, but I’m not. I’m reading to his brother, who wouldn’t be here if he hadn’t died. And he did! Floyd had his first dental appointment today; a milestone Jay never reached. We sat down and the dentist said, “I just love his sweater!” My gut reaction was to respond with, “Thanks, it’s his brother’s.” But I didn’t. I stopped at “Thanks” and spent the next minute wondering if I should have put that on Floyd today.

Grief is a 24 hour a day, 7 day a week experience. You get breaks, sure, but you’re on call for grief for the rest of your life. You don’t know when you’ll be pulled into the sads, or get those dreadfully traumatic moments where you actually, fully take in what has happened to you, your family and your child. So you must forgive me for running away for awhile. But as I said, it’s a job that never goes away. I will always be back.

For grieving parents: What do you do when you need to run away? How do you take breaks in your own life? Do you feel guilty when you do? I do sometimes, but I do it anyway.

Also, I would love to write more about topics that interest people. If you have any ideas for things you’d like covered, please message me with your thoughts. I have always wanted this blog to have more reader comments and input, so please feel free to ask for any grief topic to be covered.


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One Book

Now that my daughter is a big first grader, she doesn’t bring that much art home from school. Most art is done at home. She incorporates themes using whatever she’s into at the time. Right now it’s fairies. But with any theme, there’s always an impressive level of symbolism that bowls me over. She’s not afraid to express herself through her art. It gives her a safety net to say things that are a little too tough to verbalize.

I like it when she draws a picture of our family and she includes Jay. She always used to include him, then stopped when it got too overwhelming. He returned for a long time, and now he’s gone again.

The reason I haven’t seen him in awhile isn’t because it’s too sad to include him. It’s because he’s been gone too long now. We still talk about him. His pictures are still up. His ashes still sit in our bedroom. But the memories she has are very slowly fading.

It’s funny being a parent. There is so much history you have about your children that is forgotten to them. All the years I chatted with her while nursing, changing her diapers hundreds of times, putting her down for naps, all of that is gone for her, but still with me. I’m watching time go by in a different way, and I’m watching memories slip right out of her head that I will always hold in my heart. In 10 years, she will barely remember Jay at all. She will have a million memories with Floyd, all going well.

And is that bad? That’s a tough one. It is very sad that this beautiful, smart, funny, gentle child we had will be largely unknown to her. But if I had to choose how my sweet daughter would lose a brother, if I had the power to dictate how much or how little pain she would experience over the loss of someone in her immediate family, well, then this is the way to go, I guess. She will always carry that loss. It will always be a part of her life story, but it won’t be her whole story, and it won’t ever be as big a story for her as it is for me. I will take that any day. For Floyd, both Jay and my mother will be complete strangers. I wonder what it will be like for him to grow up knowing he has a brother who died.

Even I have changed. When asked, I say I have two kids. I was militant for awhile about always saying I had three, but it got so cumbersome and uncomfortable that I finally stopped. What I was really doing was just acknowledging his existence, but people didn’t perceive it as such. I think they thought I was trying to rehash something or bring them into my traumatic experience, and I didn’t want any part of that. I mentioned it the other day to someone at the gym when they were talking about kids falling. I regretted it as soon as I said it. A friend asked me h0w I was doing on the grief thing. I said, “I don’t know…I mean, I’m more dealing with the after effects of losing two people. The anxiety follows me around more than the sadness does at the moment.” It’s actually easier dealing with the sadness. The sadness is a heavy weight, but it’s a feeling that’s anchored in a past event. Anxiety is rooted in fear of the unknown, and is much more unsettling 2+ years in. When Jay first died, the sadness was so completely encompassing, like being swallowed by tar. But the sadness isn’t like that now. Sometimes, no, many times, I look at his picture and I’m astounded that we had a life with this little person who will never be ever again. It feels foreign. Who was he? Who would he have become? I think about how well I know Floyd, who is now almost 8 months older than Jay was when he died. As Floyd gets older, I will continue to understand him better and know more of his little complexities. My understanding of who Jay was…will it change or be stunted because he will always remain a baby? It’s impossible not to romanticize the future, but that’s a dangerous (and wildly inaccurate) game to play. Who knows who Jay would have been? Whatever I imagined him becoming (a rollerskating, peace-loving, shirtless kid selling pot brownies in Golden Gate Park — just being honest) he undoubtedly would have been different. Child-rearing is chock full of surprises; about half of them not being good ones. And yet my mind cannot stop imagining various fantasies in which I heave pretend futures onto a 13 month old personality. So yes, it will be stunted. Jay’s life was a burgeoning 500 page novel that stopped progressing on page 5. There is no “how did the story end?” because the author just stopped writing. No outline was left. It’s just not there.

There is a special layer of guilt over the fact that we lost a son, a younger brother to our daughter, a child who was gentle, loving, funny and kind, and we now have just that at home with us right now. Do I consider myself lucky for that? I do, as hard as that is to say. We could have been unable to get pregnant again. What if the baby had been a girl? I would have loved that girl with the heat of a thousands suns, but it would be crazy to say that I wouldn’t have crumbled every time I walked by the boys’ department in a clothing store. We lost a lot when we lost Jay. But when we were able to conceive again and have another boy, we got a couple of things back. It’s hard to admit that having Floyd was healing.

The other night I went upstairs into our TV room, which, as we have a bunch of construction going on at the moment, has become the “screw it, there’s nowhere to put this so let’s just bag it up and put it in here” room. I was looking for something and found myself alone, in this room, sitting on the couch in complete silence. I whispered to myself, “He’s dead.” I do that sometimes. The world gets busy. My head gets busy. When I whisper it, it makes it real. I have never said those two words about him out loud to anyone. I can tell you he died. The word dead, though, that’s something I just do alone. It carries a different weight. I talked to Jay that night. I hadn’t talked to him much out loud in awhile. I said things that I hadn’t said to him in a long time. I talked about Floyd. I talked about the things they had in common. I talked about how special they both are. I told him that I would always be his mama. I found myself wanting him to know how much I loved him. I didn’t want him to feel replaced.

Sometimes I feel guilty about how much I love Floyd. But all I can do is love the hell out of the son I hopefully get to keep for the rest of my life. Sadly, it’s impossible not to feel guilt about my love for him, or the fact that our lives have moved forward. The pages in all our novels continue to be written, and Jay’s book is done at page 5. We can’t change anything. We will all just love each other, and live as long as we can, all while holding a teeny 5 page book close to our hearts forever. In the end, we’re all in the same book together.

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The Worries: Part 2

Oh, thank Christ.

Two years ago a dermatologist thought my daughter might have neurofibromatosis, or NF. It’s a terrible genetic disease that neither me nor my husband have. Even though the diagnosis didn’t really fit, even after a physical examination, we were still referred to genetics for “counseling”. I put it off for two years because it just seemed like bullshit.

To make a long story short, we finally went to the appointment after I dove down several internet rabbit holes. First, I talked privately to a genetics counselor who wanted to know all about my and my husband’s family history and how everyone died, and then the department chief of genetics examined my daughter. In as many words, the doctor pretty much said, “OMG are you kidding? She doesn’t have NF. That’ll be $45.00.” We then joyfully drove away, but not before the genetics counselor told me that if I wanted to get tested to find out my chances for getting breast cancer, I could make that appointment any time. Thanks for that, lady. Whatever. I told them I would schedule a mammogram. I’m 40 and a half and just weaned my third child earlier this year. We’re just getting over this NF scare. Give me a minute before I leap tits-first into the mammogram machine. I can’t wait to get the mammogram and then shit myself for a week until I find out the results.

We arrived back into town from this NF appointment and I dropped my daughter off at school. I returned home at 11:30am and cracked open a beer. I know, it’s not even noon. I haven’t even had a beer in forever. It just tasted so good and it was so nice to find out that everything is OK.

 In this situation, an overzealous dermatologist sparked a marathon of worry and panic, and I’d like to think that most parents would be quite worried had this happened to them. The difference between me and another mom would be that the second the whole NF thing passed, my mind went to another worry. Like water slipping into the next available crack. Also, when you’re a level 10 worrier,  it’s hard to know what’s “normal”, especially when faced with a situation that’s legitimately concerning.

 Instead of worrying about what hasn’t happened yet, I should concern myself with the problem in front of me everyday.  I should worry about the fact that my anxiety takes me away from the things I cherish the most in this whole world. I have the present day to be thankful for, but as I continually look into the past and possible future, I can’t stay in the moment. I’m so worried about being robbed of my future that I can’t stop robbing myself of today. This anxiety is deeply rooted in the concept of control. If I worry so much, it won’t happen. It’s a lie I tell myself even though I know it isn’t true. It’s a heavy set of handcuffs that stops me from enjoying every good thing I’ve got going on in my life today. What a huge price to pay for the illusion of control. Until I give up that illusion, I will always be in those handcuffs. I will never be free.

 My daughter’s school hold weekly mindfulness trainings for the students. Things have really changed since I was in the first grade. I routinely talk with her about how to stay cool in the moment, practicing breathing exercises with her that have been sent home by the school, all the while being completely unable to stay in the moment myself. Children in general are pretty great at living in the moment, and grieving children are no different. As soon as things get too crazy in their heads, they’re off playing dress up or immersed in a book. Overwhelming feelings are scary for a child, so when it gets too much, they’ll turn it off like a light until later. Adults aren’t quite as adept at doing this.

 I decided several months ago to begin an easy mindfulness practice anytime I got overwhelmed. Please know that I still suck at this. But, when I can manage to do it, it really does work. It began when I would drop my daughter off at school. It was during a time when I felt particularly anxious, and after the hustle and bustle of the morning school routine was over, I would feel overcome with fear of something else happening to our little family. I hadn’t even exited the school parking lot when it began and I didn’t know how to turn it off.

 I whispered aloud to myself, “What are you doing right now? What exactly are you doing?”

“I’ve just dropped my daughter off at school”, I answered.

“What else? What else is happening?” I was thankful that anyone who saw me would assume I was speaking to my son in the backseat.

“I’m driving home. Floyd is in the car.”

“What else?”

“The sun is shining. It’s a beautiful day. My husband is home working. We might have lunch together. Everyone is safe and happy.”

“Anything else?”

“No, I’m just driving down the road right now. I’m going home. We’re just in the car going home.”

 I kept going like this until I felt better. By forcing myself to live in the moment, I was able to appreciate the good things happening all around me. When people ask me how we’re doing, I tell them that we’re doing well, and it’s the truth. My head notwithstanding, everything in the present is fantastic. As anxious and fearful as I can get, I’m not a quitter. Me living out my days in an anxious ball of fear is not acceptable to me. I’m just a couple years out from losing my son, but I already know that this can’t be my forever. I have a lot of work ahead of me, but I’m going to make it. We are all going to make it.

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The Worries

Some people take life as it comes, worrying about something when there is a clear, imminent risk of something crappy happening. I envy those people with all my heart. What it must be like to go through life not constantly thinking of what could happen. That sinking, heavy feeling of anxiety not expanding in your chest all the time.

I have always been a worrier. Many of my close friends and relatives have spent plenty of time teasing me about it. After Jay died, a lot of the teasing stopped. It was like, “Oh shit, the worst really happened to her. She might be onto something.” Right after he died, there was the anxiety of being under investigation. That fear was so suffocating I couldn’t even grieve for my son until that was over. People would listen to me talk about the investigation in the early days, and I think they wondered why I was so out of touch with the fact that my little boy was dead. I didn’t know what else I was about to lose. I couldn’t live in the moment when there was still so much more at stake. Once that chapter closed, I was finally looking grief in the face for the first time. So, I can’t say the clouds parted into blue skies that day.

Things got better for awhile. I had hope. Then slowly, over time, the anxiety returned. It wasn’t like my worrying before, which used to just center around what was going on in my world and would be a temporary inconvenience. I went from being “a worrier” to “someone that has some anxiety issues.” I’ve talked about it before in this blog. Sometimes it gets revved up to this fevered pitch that I can barely control. Other times it’s completely manageable. Being distracted helps. It works like a record player. My record will play along just fine for awhile, and then my needle (which apparently is ultra shitty) starts skipping. The skipping goes and goes and goes until something distracts me and the needle gets gently set down again. The song continues on until the next skip.

These skips can be reset literally overnight, or even in a moment. Someone will say something or I’ll read an article that puts things back in perspective. The fortunate thing is that it’s not hard to reset the needle. The unfortunate part is that needle will skip on a dime, so I can reset it, feel great, and an hour later I’ll be back in worry hell. It’s one of my least favorite parts of me and it’s embarrassing, but it’s the truth.

This week the skipping of my record has been jacked up to ridiculous status. A possible health issue for someone in the family has cropped up as a scary concern.  We learned about the possibility of it a couple of years ago, and since this news was first dropped on me a cool 5 months after losing Jay, I just set that information in the recycling bin of my mind and went on managing the tornado that was our life back then.

Skip to later this week, when we have an appointment with a doctor. She will do some more investigating and possibly send us off to a specialist. I apologize for being vague, but I hope you can understand that while I wear a lot of my life on this blog, I can’t wear it all because other people’s personal business needs to stay just that, at least for now. It’s not a life or death situation.

This all has led to my record skipping like a motherfucker. Did someone scratch up my LP?!?!

One thing that has helped me is reminding myself that the family is all in this together. I’ve seen what we can do. We have overcome more than one tragedy and we have done it with flying colors. It really sucks to have your strength tested like that, but we all got A’s.

However, I’m tired of having my strength tested. I just want to relax, man. We lost our son, we lost my mother, and I’m done with tragedy now. Thanks for the strength testing, we did our part. I don’t want to say go bother someone else, but we’re good. Being strong is tiring. My record is skipping because I’m always afraid of what’s around the corner. You can call me paranoid, but I’ve seen enough corners to feel like it’s never ending.

This week will pass, and we’ll wait to hear back from the doctor, and if they want to investigate further, we’ll enter the next step of testing. Then, if we get a definitive diagnosis, we’ll have to jockey for position, become strong again and trudge on. It will be a constant battle of resetting the needle.

If it turns out that there are no health issues, I’ll sheepishly chide myself for getting all riled up. And that’s good. I need more instances where my silly little worrying was all for naught. That helps me have hope. It smooths out that needle a little bit the next time a worry comes along. But if my worries are founded, if we’re given yet another pile of rocks to carry through life, I’m going to be terribly saddened. I had almost 40 years of fairly carefree living before the rug was yanked out from under me. But my sweet girl had only 4 years of life before being handed a weight no child should carry, and then another weight 18 months later. I know life isn’t remotely fair, but she’s the person in my world who could really, really use a break.

I look at Floyd all the time, with 20 months of life under his belt. He enjoys a completely carefree existence. It’s enviable. I hope that lasts for a long, long time. But however long it lasts, whatever we learn from the doctors, no matter what comes at us, I will do everything in my power to convey to my children that we can do this. No matter how tired and frustrated I get that we keep getting dealt shit cards, I will never stop going to bat for my children. My only real job in this life is to send my children the message that you can not only survive, but thrive until your last day. It’s true because I will make it true.  It would just be so much easier with a better record needle.

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The Visible String

Once we lost Jay, my first priority was to do everything I could do make sure my daughter was OK. I called a psychologist I knew and had a phone consult. She had me write down a list of things to do: Get some good books about grief. Read them first to make sure they aren’t horrible (there are some real trainwrecks out there), buy a mini ambulance and some dollhouse furniture so that she can reenact the accident through play. Get her some therapy.

I started with the books. I read through several of them that I truly thought were awful. There are a few that I really like, and they’re linked on my site here. I haven’t read every children’s grief book, and if you find one you really love, please let me know.

One book we enjoyed early on was The Invisible String. While it does mention Heaven one time, it’s not a religious book. It explains how we are all connected by an invisible string no matter how far apart we are (even in heaven). The invisible string is, of course, love.

While my daughter really likes this book, it’s hard to read. Books about death are not ones your child can read every night, so don’t expect them to be able to delve down into their saddest, most vulnerable beings minutes before you turn off the lights and jet downstairs for a king size glass of wine. She likes to do it when she’s thinking about her grief but is strong enough to handle it. Read it once and then put it away. If they’re 4 years old or older, they’ll see it on the bookshelf. When it’s time to pick a book, they’ll choose it when they’re ready. If they don’t choose it, don’t push it.

One issue with the Invisible String is, well, it’s invisible. That might go over well with some kids, but my daughter isn’t jazzed about believing things she can’t see. She waffled between loving the book and thinking it was a pack of lies. At one point I thought she wasn’t going to pick it anymore. And then months later, she’s pulling it off the shelf for me to read to her.

Yesterday we came home from dinner and did our nighttime routine. I told her a story instead of reading a book. Afterwards we said our goodnights. Lately we’ve been having issues with her coming down repeatedly asking for water, because she’s scared, or she misses me. Tonight she missed me.

She took dozens of feet of yarn and gave it to me to hold onto the entire night. It was the Visible String. It wasn’t enough to know that I loved her and that I was nearby. I tied the string to my belt loop while I finished some yard work and did the dishes. It felt a little like being on house arrest. It kept breaking, getting caught on things, and she kept coming downstairs to tell me she missed me. It was an hour past her bedtime and I was starting to stress out. She has a cough and now she’s missed an hour of sleep because of this string project.

At 8:30 she came down a second time to tell me she missed me. I reassured her that I was just right here and I was dutifully wearing my string. She also wanted me to have the baby monitor right next to me, which didn’t work because it needed charging. I walked her back to her room when I noticed that she was busy trying to untangle the giant string for the 12th time.

“Go get in bed and I’ll unravel it as you go!” I said impatiently. She slowly made her way to bed.

“But mama, will you still hang onto your part?”

“Yes, of course! But I need you to go to bed. Please, you’re getting a cold. Just go to bed.” I knew she could hear it in my voice that I was losing my patience. We were right by my son’s room, so everything I said was in a whisper-yell.

She turned off her light and got in bed. I had to untangle the blasted string yet again and walked back to the kitchen. The string caught on something and it broke. I turned around and almost went to get it, then stopped. “Screw it!” I whispered to myself.

I sat at the computer and did some writing. I kept looking back at our Visible String, broken on the living room floor. I felt like a terrible mother for getting mad at the continual trips downstairs because she missed me and her need to make sure the string was working.

After several minutes, I walked back to the living room and, after untangling it from my son’s toy truck and the cat scratching post, re-tied my string. Then I picked up another piece that had broken off when I tried to make it stretch to the toilet and added that back on so that I would have more room to move around the whole house.

Visible strings are a pain in the ass. So are invisible ones sometimes. Every parent makes mistakes, but it feels so terrible to make one as a grieving parent with a grieving child. I wanted to run upstairs and tell her that I still had it on, and that I loved her. I gathered as much of my string as I could and tiptoed to her room, knowing full well what kind of a string-tastrophy this was going to be on the return trip. I poked my head into her room.

“Are you OK?” I whispered. No answer. She was asleep. My heart sank. I felt like I missed this opportunity to hold these anxious feelings for her.

I walked back to the kitchen, untangling my string on various object as I went. The string went almost to my own bed, so I left the string attached to my jeans and put them on the next morning before I woke her up. I wanted to show her that we were attached, and that I took it seriously. She seemed surprised I still had it on. We had it connected over breakfast and after I took something out to the recycling (yep, it was long enough to stretch out there, too) I told her I should probably cut it now. She saw that it got stuck outside and I couldn’t go with her to brush her teeth until I had untangled it from a mint bush outside and also our front door frame.

“Oh, I already cut my part off,” she said. I was relieved.

“Really? Oh!” I took some scissors and cut the multiple knots off my belt loop where I had tied and re-tied them over the last 12 hours.

“But you should keep the string,” she said.

“Oh, I will, baby. I’ll definitely keep it.”

Now the string is carefully wrapped up on the counter. I want to put it somewhere where I see it regularly. It’s a reminder of the fact the tangible is just as important as the intangible. It’s a reminder of how much she needs me and needs to know I’m there. And when a string breaks, always, always go back to re-tie it.



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Diet God

When your child is brain dead and you decide to donate their organs, there comes an actual moment when you walk away from them forever. They’re in the hospital bed, breathing (with assistance of a machine), heart beating (on it’s own accord–that’s a rough one), and you say goodbye. You get in your car and drive off to a brand new existence, one that you can’t even imagine yet. Meanwhile, they stay there, without you. Do they know you’re gone? No, I don’t think so. But you know it.

The day after we did that very thing, I had to call my daughter’s preschool and tell them that our son had died. I didn’t tell them that his heart was actually still beating that day, that he had one more day of heart-beating status. I couldn’t go there. I told them that we were out of town, that my son fell back in a chair, and that he died. That one sentence story has become my script for when I have to tell people what happened in just a few seconds. While on the phone, I was standing in my mother’s back patio so my daughter wouldn’t have to hear this conversation. I was put on speaker phone in the school office. I noticed because the next words spoken on their side were echo-y and radio-like.

“Oh honey, he’s fine! He’s an angel now!”

About a million “what the fuck”‘s went through my head. I’m lucky in that I haven’t heard that again since that moment. I couldn’t even believe that of all the possible comments that could have come out of that person’s mouth, they chose that one. I was astounded at this woman’s complete inability to respect what I had just said. I was thrown a platitude less than 24 hours after I’d left him. If you want to bring God into the mix this early with someone who has lost a child, the only reasonable response is this:


Let me be clear: I’m not an atheist. I’m not even an agnostic. I believe that there is more to this universe than we can perceive with our tiny minds. I think if anything is a sin, it’s the presumption that we actually know the answers, and that our story of religion that we were taught is the right story and that other people who were taught religion somewhere else have the wrong story. When it comes to faith, smug confidence is a bit of a naive way of moving through life and the world.

While I feel confident in my belief system that we can’t possibly know what is beyond our realm of understanding, this “faith” is not that comforting when you lose a child. There is absolutely nothing I would love more than to know that Jay is actually somewhere being taken care of by my mother and all my other relatives. To be reassured that he really, truly is fine and happy and that I would see him again would be nothing short of utter peace.

I know plenty of people who completely believe this to be true. And why not, right? If you have that faith, keep it. I’m not here to tell you it isn’t true. You might be right! I’m just not wired that way. A lot of us aren’t wired that way. When you don’t have faith, you’ve got to find something else to hang onto, because without God, things can get pretty bleak. Without that extra foothold, it’s pretty easy to go down a rabbit hole.

How do you move through the world without God when your child is dead? Do you feel like you need a story about where your child is now, or are you OK with the idea that they simply ceased to exist, their soul/personality/spirit is just truly gone?

For those who have complete faith in heaven and Jesus Christ, I call that full fat God. They drink the whole thing down and it’s the best tasting God there is when you’ve lost a child.  Your child is sitting on Jesus’ lap and they’re having an awesome time. Other parents who aren’t as religious, but still believe in God, might not be able to drink down full fat God. They go for Diet God, meaning they believe in an afterlife, but maybe the pearly gates and stuff is going a little bit far, but in the end they hope to be reunited with their lost loved ones. These are the “spiritual but not religious” folks, the “Nature is God” club, or any other philosophy that basically says, “I believe in something, don’t know what it is and I’m OK with that.”

Then there’s God Zero. There’s no afterlife. When you’re dead, it’s like a switch on a robot. You’re off and you’re not coming back on.

I have a hard time with the concept of things being gone. Where did it go? I wrote this post last year about the idea of things just being nowhere. It’s one of those questions that will bob around my head for the rest of my life. Maybe a scientist could sit down with me and plainly explain how something like the essence of a person can cease to exist, or maybe just someone with more than a 2nd grade understanding of biology, like myself.  I don’t think I would listen, though. I can’t. I want him somewhere so bad. I don’t know where he is, whether he’s in a heaven, or floating around as energy in a billion different tiny places at once. I don’t want to know the science of it, and I can’t imagine him sitting on God’s white-robed lap. But I want him around too bad to be fine with him being nowhere. I understand why people find God after losing a child. It’s a much needed dose of hope and reassurance that, after all that’s happened, things are still OK. That’s what we as humans always want to believe, isn’t it? I can’t drink God Zero. Gimme some of that ice cold Diet God.

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A Few Questions For The Pros

That’s right, this is for the pros; the people who lost kids a few years ago, maybe even 30 years ago. You’ve gotten pretty good at the whole grief thing. You go on vacations. You go out to restaurants and the only thing on your mind is whether or not you want to order an appetizer or just get right to it. You have a couple glasses of wine and the conversation doesn’t turn into a puddle of tears about how you’ve failed your lost child. You move through your days with  your child always in your pocket. While before it felt like a giant jumble of keys in your front pocket that stabbed your thigh every time you walked, now it’s a smooth-yet-overfilled wallet in your back pocket. You can always feel it, but you can sit down comfortably and if you had the chance to take it out of your pocket, you wouldn’t.

There’s always the little things that still get us. Currently, for me, it’s the new Julia Roberts movie. Her daughter dies. I’ve seen the preview a few times already while in the theater to watch something else. It hurts to see a child die, even in a movie. But while that’s probably the biggest thing that rattles me, the part that really nails it in is  how they made Julia Roberts look after she lost a child. I don’t think they had any idea how right on that was. Hair semi-combed, no makeup, washed out face, aged 10 years, all rolled up with a serious ‘no fucks given’ attitude.

I had to see the preview a couple of times to notice that was me. It’s been me for 2 1/2 years now. I spent so much time and effort trying to make my daughter OK and trying to get some normalcy back into my life, that a lot of other shit just went out the window. I’d routinely leave the house to drop my daughter off at school without ever looking into the mirror. Teeth unbrushed, hair uncombed and the previous day’s mascara camping out under my eyes was just a regular morning for me. And it wasn’t that I was just too busy and I didn’t realize it. I sincerely didn’t care. If you think about Maslow’s Hierarchy of Needs, I just wasn’t far enough up on the pyramid to be able to give a shit on that level.

I sat at this level for a good while. I needed to be there and I don’t think I had the wherewithal to even know what was missing. Also, when you spend so much time trying to be OK, you often aren’t paying attention to the parts of you that are still plenty fucked up.

For the people who have been grieving for a long time, my question for you is: What areas of your life are you still fucked up?

I’ve already told you about my lack of hygiene in the mornings, but I’ve got a few other fucked up things happening concurrently. One of them is that I can’t ride in the car with my husband without being in a panic. I’m convinced we’re going to die in a car crash. I gasp and yell “Watch Out!!!” when I think a car is getting too close to us in the other lane. I jam on imaginary breaks any time he has to stop short. I’m a real treat to ride with.

Things are better now, but I spent at least 9 months thinking about death all the time. Any time I made plans to do something fun, the thought would be followed by, “I hope I’m still alive by then.” When people would talk about their kids graduating college I still think, “I hope my kids live long enough to go to college/get married/have a family.” Those thoughts are as automatic as breathing to me, and I hate it. I’ve developed some special mind tricks to get me out of that thinking, but at the end of the day, there are no guarantees, so there isn’t anything solid for me to convince myself that the worst won’t happen.

It’s comforting to speak to people who have lost a child because there are so many emotions and experiences we have in common. Grief is an extremely individual experience, but it’s also really generic at the same time. My second question for my long-time grievers is: Would you be interested in chatting with other people who have been grieving a good while? What would you ask? What would be comforting to hear?

For a long time I’ve been toying with the idea of having a few people over at my house to discuss grief. I would make it a once a month occurrence, have a couple of topic questions and just see where it goes. I never went to a Compassionate Friends meeting because it never worked with my schedule (and if you don’t know what Compassionate Friends is, click on that link). I was also afraid of who would be there and what state it would leave me in. I joined a few Facebook pages that left me wrecked. No one had any hope. I can’t live that way. If I run my own meeting, I can guarantee there will be some hope. I never get a lot of comments on my blog, but, anyone have any thoughts?

Alright, I need to go take a shower. You know, the whole hygiene thing.

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